Genetic screening and ethnic minorities

Abstract

No theory of ‘race’ and ethnicity is without serious practical drawbacks for effecting selective screening for haemoglobin disorders. Universal screening raises issues about consent, resources and eugenicist representation of impairment. The latter requires that people living with haemoglobin disorders and their counsellors should be central to education of practitioners in this area. Practitioners should link explanations of the haemoglobin disorders to explorations with the client of their perception of their ethnic identity. This should address the dangers of not informing clients of the tests; of not explaining to clients the nature and inheritance of haemoglobin disorders; and of not testing those who wish not to be tested. It should enable a record of ethnicity to be made which is tailored to the specific health purpose for which the information is sought.